Cancer Data for Researchers

Before you apply for your grant: Information about Cancer Data for Researchers

About Cancer Data for Researchers
Types of Confidential Data Requests
Requirements for Confidential Data Requests
Data Release Information and Applications

    About Cancer Data for Researchers
To support the state legal mandate for cancer registration, the Greater Bay Area Cancer Registry facilitates cancer research by providing access to data needed by investigators to conduct research studies. Individual patient data may be used to study cancer causes, prevention, care and treatment. These data are released only after requirements to protect confidentiality, set by state law, are met. Confidential data refer to any individual-level patient data, regardless of whether it contains identifying information or not (Senate Bill 683, effective October 2, 2001).

Types of Confidential Data Requests

• Confidential patient listings include information about individual cancer patients for studies that test a specific hypothesis either through collection of additional information through contact with patients or other means, and/or analysis of the data without collection of additional data.
  
• Early case ascertainment is conducted when patient contact is needed more quickly after diagnosis than is possible through regular reporting to the registry. 
• Linkages are performed to match individuals listed on other databases (for example, occupational or health care) to the registry database to identify those who have developed cancer. Linkages of a cancer cohort may also be conducted to determine outcomes (e.g., vital status).  Linkages are conducted through the California Cancer Registry (CCR); visit their researcher Web page for more information.
  

Requirements for Confidential Data Requests
To obtain confidential data, an investigator must meet all of the following requirements, as defined in the CCR's "Access to and Disclosure of CCR Data":

• Demonstrate that the purpose of the research is consistent with the state mandate "... to determine the sources of malignant neoplasms or to evaluate measures designed to eliminate, alleviate, or ameliorate their effects" (California Assembly Bill 196, passed in 1987)
  
• Provide compelling scientific justification for the research, with evidence of peer review
  
• Have a study that has undergone examination by the California Committee for the Protection of Human Subjects, a federally-approved Institutional Review Board (IRB), as well as any other IRBs as required by the recipient institution
  
• Show evidence of adequate procedures for protecting the confidentiality of patient information
  
            o CCR Confidential Data Handling Essentials (PDF)
            o CCR Information Security Policy (PDF)
  
  
• Provide assurances that information on individuals will not be disclosed further

For a more detailed description of the requirements and associated legislation, please go to the California Cancer Registry's Legislation and Regulations Web page.

Data Release Information and Applications

• Before you apply for your grant
• Data release policies and procedures
• Scientific merit peer review
• Institutional Review Board approval
• Confidential patient listings
• Early-case ascertainment (ECA)

Before you apply for your grant
Please read the following information and submit an intake questionnaire.

• Before you apply for your grant: Information
• Before you apply for your grant: Questionnaire

Data release policies and procedures
All data recipients are required to abide by the following policies and procedures:

• CCR data access and disclosure policies 

Scientific merit peer review
Studies requesting confidential data are required to provide evidence of peer review for scientific merit. Studies funded by the NIH, ACS, DOD, California BCRP or CRP, or other similar institutions are considered to have undergone sufficient peer review. Studies that have not undergone sufficient peer review will be reviewed by NCCC's Scientific Review Committee. 

• NCCC's scientific merit peer review application guidelines

Institutional Review Board approval
Studies requesting confidential data are required to receive approval from the California Committee for the Protection of Human Subjects, a federally-approved Institutional Review Board (IRB), as well as any other IRBs as required by the recipient institution. 

• California Committee for the Protection of Human Subjects Instructions for Researchers

Confidential Patient Listings
If you are funded and ready to apply for confidential patient listings, please submit the following application.

• Confidential patient listing application      
  • Appendix 2   (Agreement for Access to CCR Data)
  • Appendix 3   (Confidentiality Agreement for Disclosure of CCR Data)
  • Appendix 4   (Example Confidentiality Pledge)
  • Appendix 5   (Procedures to Maintain Confidentiality of CCR Data)
        

If you have any questions, please contact Kari Fish at 510-608-5036.

Early case ascertainment (ECA)
If you are funded and ready to apply for ECA, please submit the following application.

• ECA application
  • Appendix 2  (Agreement for Access to CCR Data)
  • Appendix 3  (Confidentiality Agreement for Disclosure of CCR Data) 
  • Appendix 4  (Example Confidentiality Pledge)
  • Appendix 5  (Procedures to Maintain Confidentiality of CCR Data)
        

If you have any questions, please contact Karen Hussain at 510-608-5117.